Dear friends of Bezaleel. How time flies! Sometimes our days resemble some attempt at controlled chaos with unexpected illness throwing carefully planned days to the wind. Nevertheless, God is in control, He is good and expresses His love and provision for us in a constant and faithful way. As far as some of our children are concerned a lot has happened since we last wrote to you, so let me begin with our youngest, Rose. Rose, at 16 months has begun to show signs of her eczema coming under control despite 2 serious skin infections that caused huge, open, weeping sores, taking a long time to heal and distressing her. The eczema has become more localized, affecting mostly her head, neck, shoulders, one arm, and sometimes her tummy. With the help of our paediatrician, we are trying a number of ways to control the itch, which leads to her discomfort and scratching which aggravates the infections. Eczema is illusive and remains one of the most frustrating conditions to treat among those that present themselves in our children. Thank you for your prayers regarding her eczema. Rose is sleeping far better and very often through the night. As I mentioned in the previous newsletter, Rose saw an Occupational Therapist and her condition has been diagnosed as Cerebral Palsy. A C.T. scan would be beneficial in pin pointing the area of damage to the brain. Fortunately the C.P. is not too severe and with treatment (she sees the O.T. between 2 and 4 times a month) should allow for normal function in both her right arm and leg. A foot splint has been fitted to prevent her Achilles tendon from shortening and her toes from curling inwards. We do exercises with her to strengthen her leg and arm and counteract the stiffness present. Rose is sitting now and her posture is good. She is also crawling (classic crawl) all over the place. To begin with, she would swing her right hip instead of moving her right knee forward, but in no time she began to use both legs correctly. Rose still has quite a lot of stiffness in her right arm and her fingers tend to curl although they’re not clenched anymore. She pulls herself up on furniture and holding onto the coffee table, she walks around it. Rose is not walking by herself yet, but when we hold her hand she takes steps, bearing weight well on both feet. Initially her centre of gravity was off and she would lean forward when standing, but now she is more upright contributing to her eventually being able to walk. When Rose first began to reach her arms out to us, it would only be her left arm that she’d lift. It looked like she was saluting us, but now she lifts both arms. Rose is saying a few words, “Daddy” also being her favourite word. She chatters away in baby talk and I think that once she is articulate, we won’t stand a chance of getting a word in edgewise. I wonder whom she takes after? Her favourite game is peek-a-boo, responding to the question “Where are you?” by saying “There!” Rose is making steady progress. She is a delightful, happy little girl with a lot of determination. She regards obstacles as a challenge and something to overcome. (Rose never crawls around things she crawls over them.) My 7-year-old daughter, Lizzie loves her little sister a great deal and her job is to feed Rose her meals and is quite put out if anyone else does it.
Rose is very attached to me (Sue) and objects loudly if taken from me by one of the other family members. On the night of May the 13th, Rose had a seizure and in the space of 10 hours had another two. Rose had her fourth seizure while we were at the paediatrician the following day. They were fever related which we later discovered was due to chicken pox. Although she had a rash on her body, it was difficult to diagnose because the eczema masked it. Only when Ernest broke out in the rash did we realize what Rose had. The seizures were very frightening but fortunately Rose recovered from them quickly with no side affects. Her temperature was not extremely high, between 38°-39° and not detectable to the touch. Some time later, Rose had another fever related seizure due to the skin infection she had and if there is the slightest hint of a fever we treat it immediately. It seems that she will outgrow this tendency. Rose had a viral load blood test done which came back undetectable indicating a sero-reversion. We will have an Elisa blood test done at the age of 18 months to confirm this result. Despite everything that’s happened to Rose, I am certain it’s not HIV related. We look forward to the confirmation of this result and thank God for the plans He has for her future. Ruth is 23 months of age and her foster placement with us is finalized. She is exceeding all expectations despite persistent illness. The results of Ruth’s blood tests show that she is HIV positive, anaemic and with a moderate CD4 cell count. Her viral load registered at the highest count possible, reading at 750 000 copies/ml. Antiretroviral treatment was recommended for her. In April, due to the generous contribution of people concerned for Ruth and the children at Bezaleel, she began antiretroviral treatment on a two-drug combination. At the beginning of her treatment, Ruth had diarrhoea as a side effect but her tummy is normal now. At the same time that Ruth began treatment, some pharmaceutical companies drastically reduced the prices of antiretroviral drugs enabling us to have both Ruth and Walter on treatment. Our paediatrician cautioned us not to expect a huge drop in her viral load because it was so high and she was only on a two-drug combination. Every 3 months Ruth and Walter have blood tests to determine their progress or lack of it. To see whether the drugs are still effective and if treatment needs to be changed. A CD4 cell count, a viral load test and a test to check for anaemia are done. Once Ruth’s results came back after three months of treatment we were astounded. Her CD4 count is normal and her viral load is down to 137 000 copies/ml. She no longer needs prophylaxis (an antibiotic called Bactrim) for PCP because her CD4 count is normal. We are very grateful because she is allergic to Bactrim and other treatment is very hard to come by. Antiretroviral treatment has certainly changed the face of AIDS for our children and their life expectancy on
treatment has increased from 2-5 years to +/- 9 years and into their teens. Our paediatrician recommends that we don’t inform the children of their status until they’re about 8 years old or when they’re ready to understand. In the midst of the good news Ruth became seriously ill with pneumonia but responded well to treatment. She was not hospitalised during her illness but rather, we cared for her at home. True pneumonia responds very quickly to the right medication and I think without the trauma of hospitalisation (certainly in Ruth’s case) she recovered very well.
Ruth has had no further infections in her eye but has had a perforated eardrum through infection and this condition often flares up, causing her great pain and sleepless nights. Each time Ruth is ill, it sets her back but she soon bounces back to her usual self. Ruth is walking now and has a good sense of balance. She’ll walk around the house at top speed, her one arm swinging next to her body, when she is in a mind to show off. Ruth is much more comfortable with people around her now. She no longer cries but slowly walks past them, looking out of the corner of her eye to see if she’s noticed. Ruth has begun to identify her body parts, her tummy being her favourite. She lifts up her clothes to reveal her rather large tummy for all to see when asked where it is. She also points to her nose, ears, etc… Ruth remains very affectionate and is happiest when cuddled. Ernest, at the age of two and a half is a little boy (literally) constantly on the move with a high level of curiosity about everything around him. He has a fascination for crawling insects and his desire to investigate everything can get him into trouble sometimes. Every now and again he’ll say something (normally not understood by us) followed by “Can I, can I?” Our response is normally “No” because we don’t know what he asked and the results can be unpredictable to say the least. In spite of his confidence, Ernest still goes to bed with a bottle and his two soft toy puppies tucked into bed with him, and his teddy he inherited from Clayton who is now 18 years of age. Three and a half year old Thabo is our gentle giant (most of the time), making very little demands on those around him except when he’s disciplined or in any other situation he regards as painful. He then responds very loudly, howling the place down and shedding large crocodile tears. He also loves a cuddle and if I’m sitting down long enough he’ll come and snuggle up next to me. Thabo’s vocabulary is good and I’ve begun a small pre-school program with him, Walter, and Ernest. The little girls love to join in on the exercises we do, the songs we sing and the games we play. We have to put Walter and Thabo in bunk beds and they take turns sleeping on top. It has created a lot more space in their bedroom that they share with Ernest. Thabo’s viral load is 192 000 copies/ml with a moderate CD4 count. At this stage he does not require antiretroviral treatment and we’ll evaluate his condition in six months time. Thabo’s illnesses are mild and he recovers quickly. He does not require prophylaxis for PCP because his CD4 count is high enough to provide the protection he needs. Walter’s response to antiretroviral treatment is outstanding. His first set of blood tests showed his viral load as undetectable and his second set of tests showed the same. Walter’s CD4 count has remained low and he’s on prophylaxis for PCP Walter was on a combination of two drugs of which one was changed when the costs went down. We made this decision with care because the virus can become resistant to the drugs and we don’t want to jeopardize future treatment for him. What happens is that the virus has a memory and stores the information of the drugs it receives. If a drug is stopped and introduced at a later stage, the virus can become resistant to its effectiveness.
That is why it is very important not to miss doses of treatment prescribed. Because Walter had been on treatment for such a short time and his viral load undetectable, we felt the decision was reasonable. The second blood test indicated that Walter’s CD4 levels were still low (10%) and a third drug was introduced in the hopes of boosting it and making his present combination effective for a longer period. We want to express our gratitude to the person who has faithfully contributed to Walter’s treatment. It has certainly made a huge difference to his quality of life and his life expectancy. Walter is like any other boy his age except in regards to his physical strength, which is somewhat limited. He tires easily when physically active and his co-ordination is not good. Nevertheless, he is happy and very rarely experience ill health. He remains small for his age, weighing 16kgs and wearing clothing sizes for 3-4 year olds. The children love to have stories read to them and their favourite videos are The Jungle Book, Tigger, and The Rugrats. Ruth and Rose love to dance, with Rose rocking from side to side and Ruth bending her knees in rhythm to the music and twirling her hands in circles and wave movements. Often the children will look for their cylindrical wooden blocks and use them as microphones to sing into. Every now and again the children will have a go at each other, with biting being one of the methods of attack, tears flowing everywhere and the others making sure we know about it. As a home school family, our daily lives present constant opportunity for building co-operation, consideration, responsibility, and friendship among the children.
An old age home in our area has approached us concerning a little girl of two, named Pauline, who has been institutionalised since birth. She has hydrocephalus and has had a shunt inserted. She also has clubbed feet and an operation has been scheduled for February to rectify them. I’ve arranged for an assessment of her condition and future prognosis in October. She has been abandoned, and despite attempts to place her in foster care, nobody has responded. An old age home is not the place for Pauline and she needs to come home to a family who will love and care for her despite her condition. Please pray for her and a family for her. Please also pray for our friends David and Lyn Royle, their three boys and their two foster children Siphwe and Johannes who both being four years of age, are HIV positive. Our prayer is that Lord will enrich their lives as they so graciously share them with the two little boys. Thank you everyone for your love and care, your prayers, support and friendship, expressed in so many diverse, numerous and helpful ways. You continue to make possible the care we give our children, and we value you all very much. The love and care of the Lord be your daily experience. With love and blessing. Allen and Sue. Email: [email protected]
De Community Reinforcement Approach (CRA) Artikelen De Community Reinforcement Approach (CRA) Operante leerprincipes, sociale-systeembenadering en gedragsfarmacologie Inleiding CRA-interventies: de klinische praktijk Resultaten van effectstudies CRA in Nederland: Novadic-Kentron Tot besluit Literatuur ‘Men vangt meer vliegen met een druppel honing dan met een vat azijn.�
Di Bella Paolo, dirigente medico - recapito telefonico: 090.60128929 [email protected] Incarico rivestito: Responsabile Neurofisiologia Clinica , Degenza C Docente nel Corso di Laurea Triennale per Tecnici di Neurofisiopatologia . Membro del Comitato Etico del Centro Neurolesi “Bonino Pulejo” Membro del comitato infezioni ospedaliere ( CIO ) e CTO dell’Ente Incarichi precedenti